The initial conversations with your doctor after being newly diagnosed with a chronic illness are some of the most important ones to have. They set the foundation for what’s to come and build the rapport with your doctor that you will need in the years to come.
That said, one of the most challenging parts of the process is knowing what to say and when to say it. Sharing information with your doctor is more than just sharing the details of your medical condition. It also encompasses your mental health, ongoing medical care and friends or family members who support you. Many people have few supports in their life and that also needs to be share.
Good communication with your doctor will help you build confidence in their ability to support your health problems and encourage you to talk about difficult subjects so you stay as healthy as possible.
Below you will find tips for talking with your doctor. They are separated based on topic and different stages of your health care. Take a moment to read the article, and either save it or print it for later. As time passes with your chronic illness, you may find that the tips here are more helpful.
Ultimately, that’s why I created this checklist of topics to talk with your doctor about so that you feel more prepared for what lies ahead.
Things that Make Talking with Your Doctor More Complicated
Before getting into the topics to discuss, I think it’s important to acknowledge some things that can make conversations with your medical team more complicated. Whether you’ve been waiting for the diagnosis for a while or it caught you by surprise, you’re likely to experience a range of emotions in response to the news.
This is completely normal.
You may feel relieved to finally have a diagnosis for your chronic condition because it gives you answers to what’s going on with your health. A diagnosis can also help you feel seen and understood, especially if you had to convince people that something was going on. Living with an invisible chronic condition is genuinely hard.
So while the news may not give you joy, it can give you clarity on how to move forward.
Receiving a chronic illness diagnosis can also have an impact on your mental health. You may have racing thoughts or anxiety, you may find your self shutting down and not knowing what to say or how to deal with the news. You may find yourself crying, feeling scared, angry or completely numb.
Feeling these emotions on your own may be overwhelming. When these feelings come up during a conversation with your doctor, it can make it more difficult to think clearly. This “fogginess” can increase the chance of forgetting to ask certain questions or make observations.
There are a few wise tips to deal with this including:
- Writing your questions down and bringing them to the appointment so you don’t forget things.
- Bringing a trusted friend, spouse or family member with you to the appointment.
- Asking for a nurse or other patient advocate to join you for the meeting.
- Requesting a call back with the doctor for followup questions.
It’s also important to know that this is the beginning of the chronic illness grief cycle. Everything you’re feeling now is completely normal. Be gentle with yourself as best as you can.
My story is very similar. As a chronically ill mental health therapist, I recall this moment very clearly in my own life. I remember it as if it just happened. And I understand how conflicting it can feel to receive the news of your chronic condition.
From my personal and professional experience, I hope that the questions on this checklist can help guide your conversations with your doctor as you navigate all the feelings that come up during the appointment.
How Your Chronic Illness Looks Over Time
Your condition will evolve and the questions here are to help you gain some perspective on what things potentially will look like as time passes.
- What will my life look like with this chronic illness?
- How bad can this get?
- Is my chronic condition fatal?
- What are my limits with this illness?
- Can I still do _____ with my condition?
- What can I do to improve my chances of living a meaningful life with this condition?
What Current and Previous Research Says About Your Condition
It’s important to learn about your chronic condition and this is one of the first things to do after being diagnosed. Talk with your doctor about the particular details you need to know so that you can make the best, most informed decisions about your health.
- What do you know about my condition?
- What is your experience treating someone with my diagnosis?
- How common is my condition?
- Is it possible to live well with this condition?
- What should I expect moving forward?
- Do I need other doctors/medical treatment?
- Are there any handouts or articles I can review to learn more about this condition?
- Is my chronic condition genetic?
Explore Your Chronic Illness Treatment Options
Your doctor will likely recommend specific treatments for your chronic illness. These treatments may range from emergency care, to daily treatments, to your regular follow ups and more. Explore the options presented to you with an open mind and curiosity, if possible. And ideally, talk with your doctor about the range of options that fit your values and your needs.
- How has my condition been treated in the past?
- Based on my specific health needs, what are my treatment options?
- What are the potential side effects for these treatments?
- Are there other treatment options if the side effects are hard for me to manage?
- Where can I find information about these treatments?
- Can my chronic illness be managed without medication? If so, what would that look like?
- Are there supplements, holistic options, food or diet options that will help me?
- How would these treatments work with my other health treatments and/or medications?
- Will these treatments make me feel worse?
- What are signs that the medication is not working?
- Can I take some time to think about these treatment options before making a final decision?
Predictable Lifestyle Adjustments That Come After Your Diagnosis
A chronic illness diagnosis often brings on adjustments, some of which can feel pretty inconvenient and difficult. That said, there are lifestyle changes that many make your adjustment and management of your condition easier.
Lifestyle changes can range from changes in your diet, exercise or sleep schedule. You may also follow a treatment plan that manages your time differently or adjust how you carry out daily activities.
- What adjustments do I need to make to be prepared for what’s next.
- What adjustments does my family/spouse/co-workers need to make to prepare for what’s next?
- Do you recommend that I take medical leave to support my recovery with treatment?
- How do I know if my chronic illness is flaring up or if I’m having a health crisis?
- What are some activities that can help me recover and maintain a steady lifestyle with this condition?
- How do I manage my condition while at work/school?
- What kind of accommodations will I need at work or school with my health condition? (Here are some chronic illness resources to get you started)
- I have a trip scheduled in the coming months, is that still possible for me? What do I need to consider before the trip to prioritize my health?
- How can I maintain an exercise routine with my symptoms without feeling exhausted or in pain?
- What dietary changes can I make to lessen my symptoms?
- How can I manage my dietary changes and still eat meals with my family and friends?
- How can my loved ones support me with these changes?
Daily Steps and Expectations to Manage Your Chronic Condition
You and your doctor will discuss a treatment plan to support you moving forward with your new diagnosis. Although it can feel overwhelming to start implementing the plan, remember that you’re not alone. The most effective health maintenance plans include steps to focus on your physical and mental health.
- Who do I contact if I notice symptoms or have questions?
- How could this illness or the treatments affect my mental health?
- What mental health professionals or support groups can I contact for ongoing support between appointments? (If you need support for your mental health, I offer virtual chronic illness support groups.)
- What other providers do you recommend to help me manage my chronic illness (i.e., occupational therapy, physical therapy, acupuncturist, psychiatrist, etc.)?
- What kind of accommodations will I need at work or school with my health condition?
You’re not alone in this new territory in your life. I know it can be overwhelming when you’re newly diagnosed. But the truth is even by reading this article you’re gaining the knowledge you need to empower yourself with your chronic illness.
Here are some other things to avoid after diagnosis.
Next Steps for Living with a Newly Diagnosed Chronic Condition
I help individuals, families and groups who are living with chronic illnesses and chronic pain manage the emotional toll that it can bring. Therapy is a powerful tool that can help you find meaning in your life after making all of the necessary changes for your health. Although the journey with a chronic illness is hard, therapy can give you tools to support yourself as you move towards acceptance.
You can schedule your first appointment with me by booking a free 15-minute consultation.